About me

PROFILE:

I have been writing poetry and stories since I was a child, and a love of reading was instilled in me from an early age. I am passionate about writing, and hope you enjoy the books I have written. Whilst most of you sleep soundly in your beds, like many Parkinson’s patients, insomnia dictates, so during those hours that sleep eludes me, the house is tranquil and quiet, an atmosphere perfect to immerse myself in writing. My life has been a series of strange events, which have without doubt contributed to my creativity. To publish anything is to bear one’s soul to the world. It is to stand naked and let everyone see who you really are. I have poured my heart and soul out on paper and I hope to share this journey, immersing you in a story, capturing your attention and firing the imagination. Through my writing and public speaking I hope to bring greater awareness to the general public about living with chronic disease.

Friday, May 30, 2014

Housebound most of the time, any
outing, however simple, is a treat. Fortunately there are a number of places to
go relatively near by, but I have to rely on
others to drive me. I hate the loss of independence in this respect, but
have unwillingly come to terms and accept it.

I have been struggling to use my
mobile phone for some time, which is a dinosaur according to my husband. The
buttons small and too sensitive for Parkinson's fingers, I reluctantly agreed
to upgrade. Someone had recommended a particular mobile flip phone, with large
buttons, making it far easier to use which was designed for older people, but
works equally well for anyone with dexterity problems. I wear it on a cord
around my neck so it's with me all the time, but the best feature of all is the
red emergency S.O.S. button on the back of the phone. This has been set to
automatically phone my husband and daughter in a crisis situation. It cannot be
accidentally pushed in my handbag, but needs to be pressed and held for several
seconds, which then lets out a loud siren noise, not dissimilar to an ambulance
or police car, indicating a message calling for "help" has been sent.
This is a marvellous feature - but I hope I won't need to use it!

Having a little outing to a local
café, my husband ordered an espresso coffee, which arrived in a tiny cup,
reminiscence of the dolly's tea cups I played with as a child. Barely one sip
and the strong coffee was gone. What interested me far more than the miniature
china wear, was the bottle of soda water that accompanied the espresso, (just
as they serve it in Italy to clear the bitter after-taste). I have never seen
such a tiny plastic bottle before, and immediately saw a great use for it. I
now keep it in my handbag filled with water, so that when out, and need to take
one of my many Parkinson's pills that are carefully spread out throughout the
day, I always have a sip of water with me to take the pills, no matter where I
am.

Changing the subject completely and unable
to segue from water bottles to cars, I'll just jump straight in….

I have received many e-mails
over the last year from people around the world, about a particular article I
wrote for The Huffington Post during January 2013, and since decided to write a
follow up piece seeing the amount of interest shown, so take a look at an issue
that effects many but little seems to have been done to rectify this problem
for the advertisers and PR of car manufacturers plainly think "Disability Isn't Sexy"!

Friday, May 23, 2014

I was invited to
give a talk earlier this week, to doctors who came from around the world to
attend a Conference aimed at those who have patients with Gaucher disease. A connection between Gaucher and
Parkinson's was made some time ago, and explained just before I began my talk.Upon waking that
morning, Parkinson's, that has a will of its own, despite my fighting spirit
and determination, decided to push me to the limits. I had to muster every
ounce of energy to talk for 45 minutes, telling my story and explaining what
its like to live with two diseases, one rare (Gaucher) and one common
(Parkinson's). Like the British weather, with Parkinson's you can never be
certain, knowing in advance if it's going to be a good day or bad day. I managed
to get my message across, for even though I've been doing voice therapy, my
voice was rather monotone and not as loud as it usually is. It was a pleasure
to meet such a lovely group of doctors who made the effort to attend the conference, and who
understand Gaucher disease.

I explained why
there is a lemon blossom flower on the front cover of my book
"Parkinson's, shaken, not stirred"; how my brother before he passed
away from Gaucher and Parkinson's at the age of 63, had bought me a lemon tree which
is planted in our garden. The picture of the blossom is a dedication to his
memory. One of the doctors asked "why a lemon tree?" to which I
replied, "when you're given lemons, make lemonade." In other words,
when born with bad DNA and have serious health issues, make the best of a poor
situation.

Since childhood,
I've always had the ability to look at the world through imaginary rosy tinted
glasses, looking at the bright side of life, seeing the glass half full, being
grateful, counting my blessings and paying attention to detail, noticing things
people often take for granted or miss entirely. I am featured in this week's blog of the indiePENdents Web site and invite you to take a look.

Life has a
strange way of leading us down paths that we might never have imagined taking.
People have the odd notion they are in control, when in fact, I often think,
call it destiny or fate play a far larger part. I have never been more focused or
determined in my life before, as I know being a health activist, an advocate
for both diseases, I'm doing exactly what I am supposed to be doing with my
life. Don't get me wrong; if I could magically be cured of Gaucher and
Parkinson's disease tomorrow, without hesitation I would gladly wave these two
unwanted guests "goodbye". I always believe everything happens for a
reason - and that principle is what I cling to in rough times. Having purpose,
a reason to get up each day, is something everyone needs.

Talking of getting up
each day and mobility, my article this week for The Huffington Post is about the beneficial effects of music for Parkinson's patients.

Friday, May 16, 2014

Finding another
Gaucher patient is always exciting, seeing there are only approximately 10,000
of us worldwide. So imagine my surprise and delight in connecting with a lady
who not only was born with Gaucher, but shares much in common with me. Despite
living in different countries, the Internet has brought us together, and a
bond, a collaboration of sorts has been founded. Emma Rooney has her own Web
site if you'd like to take a look at what this incredible lady has been up to. Over
the last few years since I began campaigning, I have come across some amazing
people. If one could somehow put us all in one room, and harness the
determination, strength of character, inspirational unstoppable work that we
are all doing in one form or another; the potential is mind blowing.

Parkinson's
disease being fairly common, already reaching several million, unfortunately
the number of patients diagnosed continue to grow. In various countries around
the world, there are support groups and foundations tirelessly doing fantastic
work to raise money towards finding a cure and offering good sound advice and
support to sufferers and their caregivers. In other words, one could say that
the global Parkinson's community is well organised and has got its act together.

Take a rare
disease, such as Gaucher, and quite a different picture is portrayed, due to
the small number of diagnosed patients scattered around the world, it is hard
to simply find one another, let alone get organised. We appear to all be doing
what we can to create awareness, and bring attention not just to Gaucher but
all rare diseases, which by mere definition, share similar problems. Receiving
good care, from a doctor who understands and knows about a rare disease is not
easy to find. It is a constant battle making those we come into contact with,
understand what Gaucher (or other rare disorder) is, whether you suddenly find
yourself admitted to the ER of your local hospital, seeing a new nurse at your
health clinic, a social worker and even your local pharmacy. Everyone who you
come into contact with for the first time, regarding your health, requires
educating, and after many years of doing this, I manage to give a concise
summary of the most important facts, relevant to the situation.I invite you to take a look at my article this week inThe Huffington Post. I wish you all a very good weekend, and to a friend who knows why
there's a dent in an old filing cabinet; I'm so glad you're feeling a bit
better.

Friday, May 9, 2014

We could all
learn a lot from Billy Connolly's attitude to life. He has the right idea using
his wonderful sense of humour and love of life to laugh at Parkinson's right in
the face. Despite the shock of being diagnosed
with Parkinson's and cancer for good measure (like myself, Billy never does anything
by halves!) his formidable character has given him the ability to look at his
prognosis with a healthy mental attitude and no doubt he'll use this situation as
a source of endless comic material. I have always enjoyed his work as a stand-up
comedian and talented actor. Billy tells it as it is, what I call
"straight talk" - for he never minces words. Some may find his
colourful vocabulary a little hard on the ear, but I love his enthusiasm, that cheeky
smile and a twinkle in his eyes, as if a mischievous school boy is up to no
good. I hope that Billy continues to entertain us for many years to come.

Having the right
attitude, a sense of humour and remaining positive is what it's all about when
you are diagnosed with Parkinson's. You want to stay far away from anxiety or
any stressful conditions as much as possible. The detrimental effects can bring
you crashing down at an alarming speed, for this is what Parkinson's feeds
upon. Of course it isn't always easy to remove oneself from a worrying
situation, or from people who are negative and unsupportive, especially when
they happen to be relatives. This is a difficult one to handle, so it can end
up being a bit of a balancing act.

Everyone makes
mistakes, for none of us are impervious; an error in haste, a thoughtless word
- sometimes actions that cannot be taken back or undone. If you've been
following my blog, you will know I write in an honest way, sharing information
and baring all, for it is from our mistakes in life, that we often learn
important lessons. If I can prevent someone out there resulting in my
situation, it will have been worth me revealing possibly the biggest mistake I
ever made which could happen to anyone. I therefore urge you to read my article
in this week's Huffington Post.

Friday, May 2, 2014

I was in a large
pharmacy the other day, walking slowly, doing "the Parkinson's
shuffle". It's not hard to be caught by an over zealous female sales
assistant, who works on commission. I find it sometimes difficult to escape
their aggressive hard sale techniques without buying something I really didn't
need. All I wanted was a simple face cream for daytime. The lady began talking
with great enthusiasm, telling me she was good at her job and knew exactly what
I needed. Barely pausing for breath she prattled on trying to sell me an
expensive product, claiming it would remove lines and wrinkles, rejuvenate and
hydrate a mature woman's face, protect the skin from harmful UV rays, fading
sun spots and blemishes and take years off making me look younger with a
special anti-aging ingredient.

I politely let
her finish the well rehearsed sales pitch, but with little patience left and
standing there in pain, I told her I wasn't particularly bothered about looking
younger. I was more interested in getting through each day, and asked if the
face cream that appeared to do everything, also cured Parkinson's, because if
it did, I would take two please. Now be rest assured, a line like that will
bring any conversation abruptly to an end!

Finally I had
rendered her speechless, and for a few awkward seconds, silence reigned between
us. She looked me in the eyes, then glancing at the fancy packaged glass jar in
her hands, she quickly put it back on the shelf. Taking hold of my arm she
gently led me to the next aisle where all the less expensive familiar named
products filled the shelves. With a distinct change of tone in her voice, showing
genuine concern, making commission clearly no longer an issue, a caring and
empathetic woman emerged before me. Handing me a simple tube of face cream, she
told me the ingredients were more or less the same and the cream would do
nicely, costing a fraction of the price. She wished me well and told me I was
too young to have Parkinson's. "Your 50 years old, right?" she said
eyeing me closely hazarding a guess. Astonished she had guessed correctly I
replied "How did you know that?" Smiling warmly and with great
confidence she said "I told you I'm good at my job!".

Being aware and
knowing about issues that concern you is one thing, but sometimes without
realising, as educated as we'd like to believe we are, natural biases and
assumptions regarding areas we are not familiar with come into play. Finding
oneself in a strange situation, life has a way of making some pretty cruel
jokes at our expense. I found myself in an odd position recently which led me
to write this week's article in The Huffington Post. I wish you all a very good
weekend and if you happen to go to a pharmacy, beware any eager sales ladies!